De Novo Stage IV
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jobbibo, greetings. Sorry you have to join us but welcome. Like kbl said, it sucks to hear of young women receiving a stage iv diagnosis. It is good to know you’ll begin treatment soon. I think my signature line says “living with metastatic breast cancer” (mbc) and that’s how many of us see it, living with, not dying from the disease. I am wishing you all the very best.
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Hello divinemrsm! Thank you for the welcome. I absolutely agree, I want to live by that motto. I’m currently going through so many emotions I swear it changes by the minute! One minute my husband and I can be laughing about something lighthearted and the next we just break down and cry together. We keep telling ourselves this will get easier to accept and we have to choose to live life to the fullest. Hoping it won’t be consuming us at all times soon enough. Thank you again for saying hello!
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welcome Bobbi Jo,
Sorry that you find yourself here but we’re a pretty good bunch! I am just about to hit the 12 year mark at stage IV. I have a single bone met and have been progression free since initial tx which was rads to the bone met. I have been on AI’s only since then (drugs like Ibrance and Verzenio had not yet been approved).
Although I wish we had more medical advances in treating stage IV, I have seen these new meds extend survival time and most importantly, give us hope for a better future. Take care0 -
@jobbibo, we're so sorry for what you're here, but wanted to say welcome to the BCO community! As you can already see, there is plenty of support waiting for you on the boards. If we can help in any way, please let us know. We're always here!
Warm wishes,
From the Mods
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Hi exbrnxgrl thanks so much for the welcome! Wow 12 years with no progression since initial treatment is amazing! It’s also nice to know that new meds are helping survival time, hoping for further advancements always though.
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Welcome Bobbi Jo!
So sorry that you were dx'd at such a young age. I am almost at 21 1/2 years survivor of Stage 4 MBC de novo with original liver mets. I had a chest node recurrence 11 years ago.
Currently at 5 1/2 years of NED and on Xeloda and Herceptin. I pray that all goes well for you.
Denise
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Thanks for the welcome Denise! Wow over 21 years and currently NED is super inspiring to hear. I hope it continues to go well for you! Sounds like my oncologist wants me to go on Herceptin and Perjeta after the chemo hopefully goes well so can only hope I have good results on it like you have.
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Jobbibo,
Welcome to the thread, and at the same time, so sorry you have to be here. Just chiming in to say there have been such great strides in treatment; Enhertu seems to be the most recent wonder drug. I'm so glad it's available to you. I was dx'd de novo with large liver mets and was NED (scans and showed No Evidence of Disease) after 7 ½ mos. Yesterday was my 3 year "cancerversary". Life is good - different than it used to be, but good to be here.
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Hi seeq, amazing to hear you’ve reached NED! Very encouraging to see so many people doing well with treatments. Thank you so much for the welcome, glad to have found you all.
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Hi all, just popping back in to give a bit of an update. My insurance unfortunately denied the Enhertu to be used as a first form of treatment since FDA regulations have it as second line so now my oncologist has left me with a choice that seems so hard to make when I’ve had no treatment before.
Essentially the plan would be Taxol, Herceptin and Perjeta with the hopes of going off of Taxol and being on Herceptin / Perjeta only. However she also brought up a National study / trial that would give me the chance of being on Enhertu.It’s a phase 3 trial and sounds like they would be studying using Enhertu for first line. There’s 3 categories one could fall into which would be Enhertu and Perjeta, another being just Enhertu and the last being a “standard treatment” sounds like could even be the Taxol / HP combo I’d be going on anyways. Oncologist said it sounds like a great study but still sounded like not doing the study and going with this standard form of treatment would hopefully work fine as well. Would still be dependent on if my insurance covers trials but have to make a decision soon so we can move quickly to get treatment started right away. Have been looking at an older Taxol thread on here and other places for side effects etc. and will probably let them know what I decide by tomorrow when I go in for lab work.
Who knew having a choice would be so overwhelming! I’ve seen people post pros and cons on trials, will continue to research and hopefully either way will start shrinking these tumors!
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bobbi Jo, Herceptin and Perjeta with a taxane is what pretty much all HER2+ have first. It worked great for me and was really easy after dropping the chemo and doing H&P alone. I was on it for 3.5 years and only switched to better treat my brain mets. Also, Enhertu is actually Herceptin with a chemo added to the drug compound, so either way, you’re getting the good stuff, that’s been keeping us alive for so much longer. I think both are great options.
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Thank you so much illimae! That’s calmed my anxiety down a bit in terms of making the “right” choice. Appreciate it so much!
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Bobbi Jo, Illimae is always such a big help. I’m glad she was able to help. Please let us know what you decide.
Kris
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Thank you for asking what I decided on Kris! I decided to go with Taxol which will be every week and will be doing the Phesgo injection every 3 weeks. Along with a monthly Lupron injection.
With the trial I would have to be on the chemo indefinitely, and while that can definitely inevitably happen down the line I am hoping I can get to a point where I’m just doing Phesgo for a while for maintenance. Of course nothing is guaranteed until we see how I react to treatment but that’s why I chose Taxol and having Enhertu in my back pocket for later down the line.I’ve been trying to mentally prepare myself for chemo, as scary as it sounds I’m still just very ready to get started!
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I hope you have few side effects and it works great. Just waiting to get on treatment is so tough.
Thank you for letting me know.
Kris
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jobbibo: Hi and welcome to the club no one wants to me a member of!! I was DX 'd de novo March 2019. Still here and doing well. I was lucky and tolerated Taxol quite well. I got a buzz cut before I started so I wouldn't be horrified by my hair coming out in hunks. Chemo beanies seemed to scream CANCER so I got really good at wrapping scarves and wearing big earrings and tried to rock a Boho look.
Now - H&P every three weeks and other than a small rash on my forehead from the Perjeta I have no SE's
Keep in touch and check out Mel's living room, where a lot of us hang out (My Husband, My Life……)
Hang in there.
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@jobbibo, here's a direct link to the thread that @elderberry was referring to her in her comment above. :)
And definitely keep us posted on how treatment goes!
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Hi jobbibo, I also had a good run with weekly Taxol and found the side effects to be surprisingly minimal. The premeds helped stop nausea and fatigue for the first two days, and a Tylenol or hydrocodone would help with the body pains that would start up days 3-4. Other than that, I felt pretty normal. Did have some hair loss initially, but then it started growing back in while still doing treatment.
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Hi ninetwelve I’m so glad to hear that the side effects were pretty minimal for you and that you had a good run with it, that’s so encouraging to hear! Hoping it will be the same for me.
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Another triple positive gal here, I will chime in to say my experience mirrors what others have said. The initial Taxol treatment was not so bad for me (hair loss and nail infections were probably the worst part) and the maintenance H&P causes me no problems whatsoever, I have a great quality of life and years of "no evidence of disease" thanks to this drug combo.
I went on anastrozole after the initial Taxol was finished and funnily enough, I felt more side effects once the endocrine therapy started than when I was on chemo! But even those side effects are a small trade off for the additional years of life these drugs are giving me. Best of luck to you and hang in there!
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Hi olma61 thank you so much for sharing your experience with these treatments, especially since you’re triple positive as well! I’m so so glad to hear maintenance H&P has been so effective for you. I’m really hoping for the same. The plan is for me to go on Tamoxifen after chemo and at that time stop having the monthly Lupron injections. Sounds like Tamoxifen and Anastrozole are both hormone therapy drugs from what I can tell but not sure the differences there!
I have my second chemo session tomorrow, first week hasn’t been too bad yet. Had a bit of tingling feet the first couple of days but have gotten back up ice packs for the cold gloves / boots so can change them out half way through, hoping that’ll help. Otherwise biggest issue I have is my face is breaking out real bad. Will bring this up with them tomorrow but trying a new face wash to see if that helps at all. Otherwise have just been pretty tired, my husband and I are pretty mentally drained but we’ve been getting a little better since officially starting treatment.0 -
jobbibo,
It sounds as if the start of treatment has gotten off to be fairly uneventful for you . Good, and I hope it stays that way.
Tamoxifen and anastrozole are anti-hormonal treatments given to ER+ bc patients. They work by different mechanisms and in general though not always, tamoxifen is prescribed for pre-menopausal women. Anastrozole is part of a class of drugs called aromatase inhibitors (AI) and is generally but not always prescribed for post menopausal women. I have not taken tamoxifen but have tried all three AI’s (anastrozole, letrozole, exemestane). Ah, life without even a drop of estrogen…
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Our little thread has been quiet lately. I hope all the de novo ladies are doing as well as can be expected.
I did end up in the hospital for some very weird things with my health, but no one can figure out what it is, so they naturally go the “This lady is crazy” route. If it doesn’t show up in bloodwork or on a scan, it must not be real. And they love to try to get you to take all kinds of pills, which I kept saying no to. I don’t want to mask whatever it is.
It’s very frustrating when you know something isn’t right but it can’t be figured out. That’s what happened with my cancer when it was missed for six years.
I’m feeling about 50% better but still kind of a weird feeling, like I’m high without taking anything to get there. I can’t drive right now because I get not quite dizzy like vertigo, but my eyes and head feel funny. I also had a 9/10 positional headache that has calmed down quite a bit. MRI was negative for mets in brain, so I’m happy about that.
I hope you’re all doing well.
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kbl - Boy did you hit the nail on the head with me, when you said that all these medical people these days know is what's on scans or in blood work, and that then they have pills, pills, pills for everything. That's sure been my experience after about 5 years now of dealing with this breast cancer business. And yes, if something doesn't show up on a scan or in bloodwork it is irrelevant, doesn't exist, and/or "you're the crazy lady". Before this, my last more involved experience with the medical people was back in the 80's when I had my kids. I've really been struck by what a whole different deal it is now. I turn down the majority of the pills they offer me too.
I do hope that you get your situation figured out and that you will be feeling better very soon!
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@threetree, thank you for validating what I’ve been feeling. You almost seem alone and feeling like you might be losing it when these people don’t believe you know your body. It does make me feel better, just like with the breast cancer, that I’m not alone in my feelings. I’m sorry you’ve dealt with that too.
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kbl-sorry about your problems and I do know the feeling! I sure hope that you can figure out what is wrong!
I have been having reactions to my Herceptin, although I have had it since 2004. And I also had hypoglycemia, apparently. I have weird stuff that happens only once. Like last October, one evening I got very hot, dizzy, BP was very high and I fainted. So I had a million tests and everything was okay.
So I have been watching my sugar and carbs. But in the last few months, I finally figured out that my problems have only been occurring after my Herceptin IV. I was getting shakes, severe muscle aches and a fever.
So the head nurse told me to take Allegra before my Herceptin, and I take Tylenol during my IV, and take a Benadryl when I get home. Then I sleep for 13 hours.
And I feel like a zombie the next day.
I also fell a few weeks ago. I wasn't dizzy and I didn't trip…I just fell.
The chemo pharmacist told me that a lot of ladies have the same reactions after Herceptin, but I didn't know that. It had always been easy for me.
I do feel reassured since I had so much testing, including a brain MRI, but I hate when weird stuff happens that no one can figure out.
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kbl - I’m sorry you’re having to deal with trying to figure out what’s going on. Sounds frustrating how they’re handling it but glad to hear the brain mri was negative. Hope you feel better soon!
denny123 - I can imagine after so long of feeling okay on Herceptin that wasn’t what you’d think was causing issues. Hoping you feel better as well!
I’ve officially finished my first cycle of Taxol. Doing 3 weeks on and 1 week off, Tuesday I start my second round. Also doing Phesgo, Lupron and starting Zometa in a couple weeks after I have a dentist appointment to clear me of taking it.Overall I’ve been feeling alright physically. Mainly tired, dealing with a face rash that’s gotten much better and just coping with losing my hair. However since yesterday I’ve been having some discomfort near my liver, right under my rib cage. Will be bringing it up to my oncologist on Tuesday and trying not to get into my head that it means treatment isn’t working. Although I didn’t get taxol last week I did get the phesgo and lupron injections. Trying to tell myself it’s so early into treatment and to calm down, just scary the discomfort came back after going away after first round of chemo.
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@jobbibo, I hope the liver pain is just a tiny blip of pain that will clear up for you in its own.
I have had left flank pain on and off that will last a few days and then disappear. I just had it again, and it lasted over two weeks. I tried to just leave it alone and hope for the best. It has finally settled down. I’ve never known what it is or what causes it.
I’m sure you e been told about the side effects of the first Zometa infusion and what to take beforehand, but if not, I will be glad to let you know what I experienced the first time and never again.
I’m glad the first round went relatively well for you. Sending hugs.
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@denny123, My Faslodex shots are something I’ve also thought about that could possibly be causing the issues I’m having. I’ve been on it 22 months. A week after the last two months I’ve also been getting a UTI. If it happens after my shots tomorrow, I’m done with it. I’m not going to have monthly UTIs. Those are one of the worst things I suffer, and I’m prone to them to begin with.
I’m sorry you’ve had issues that are unexplainable as well. Will you continue the Herceptin if you keep having things happen? It’s like you’re caught between a rock and a hard place.
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